Author Topic: D-Day for ALF - Gamma Knife - January 22, 2013  (Read 55124 times)

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #60 on: February 08, 2014, 10:12:10 pm »
Can you tell me why there are balance issues after undergoing GK?
Is that from radiation damage to the balance, auditory, facial nerves?
I thought GK was pinpoint accurate?

Thanks
lystgl

Hi lystgl,

Sorry I didn't catch your post when you wrote it a few weeks ago.

The reason that there are still balance issues after GK is because the nerve is damaged even though the tumor is damaged and the nerve doesn't regenerate.

It sometimes takes a great deal of time for the body and brain to compensate. Keep in mind that there are three elements to balance: the body, the eyes, and the vestibular. Losing the vestibular nerve means losing 25% of your balance capability.

I had balance issues (lurching) for a year after my symptoms but I was getting some compensation a few months prior to my GK and the lurching is gone. I'm occasionally a little unsteady, like when I turn or move too fast, but that rarely happens.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

arizonajack

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Shrinkage - MRI 3/13/14
« Reply #61 on: March 13, 2014, 03:46:10 pm »
I had my second Post GK MRI this morning (with contrast) and brought home the CD. It looked like the AN was a bit smaller.

Then I got a message from the VA that contained the following radiologist report:

Comparison: MRI brain with contrast performed 08/01/2013. 
       
      High-resolution images through the internal auditory canals
      demonstrate an enhancing extra-axial mass within right internal
      auditory canal, measuring 1.2 cm transverse x 0.4 cm AP x 0.6 cm
      craniocaudad compared with 1.4 x 0.4 x 0.5 cm. There is
      questionable slight decrease in size compared with the prior
      study. 

I think “questionable” refers to the MRI “slices” not quite lining up between the MRI last August and the one today.  Even a mm or two difference could make the tumor look smaller (or bigger).

But, still, it’s looking stable, so I’m pleased with the progress.

Next MRI in one year.

PS: I've lost 100 pounds since 3/21/13.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Nannybee

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #62 on: March 13, 2014, 04:41:26 pm »
Stable is good. Smaller is better. I go for my (almost) 1 year post SRS neurosurgeon visit tomorrow and hoping for good news.

Congratulations on the massive weight loss! What an accomplishment! Sounds like you're shrinking too :)
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

robinb

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #63 on: March 15, 2014, 09:54:56 am »
Hi Jack-

Great news for you.

Now can you share your method for losing 100 lbs!

Congrats on both.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #64 on: February 25, 2015, 06:18:08 pm »
Two years and one month since Gamma Knife. Hard to believe that this thread has been read almost 11,000 times.

Anyway, I've often alluded to my pre-Gamma Knife history in other posts but now that I look back over this chronicle I've decided to add it here so it's all in one place.

Sit back, relax, it's a long story.

Somewhere around 2004 or so I started to experience tinnitus in my left ear in the form of a hissing sound like air escaping from a tire. It’s not loud and I am pretty much able to ignore it. I still have it, unchanged after all this time.

Several years later, maybe during 2011, I started experience some loss of hearing. Generally found that I was not responding to friends with soft voices but had no difficulty with normal voice ranges, TV or music. I attributed it to age as both my parents experienced some hearing loss as they got older. Like most people I thought about getting my hearing tested but kept putting it off.

It was the middle of December 2011 (ah, distinctly, I remember) that I discovered a substantial loss of hearing in my right ear. Here’s what I mean by discovered. For many years I had been using a head set for telephone conversations at work and at home. The receiver was always over my left year so it never occurred to me to see how my right ear was doing. One day I was talking to my friend on the phone and we were getting some static on the line with my cordless phone. I picked up a second phone and held it to my right ear to check for static but all I could hear was the faint, tinny, far away sound of my friend’s voice. It was quite a shock.

Several other conditions became noticeable during that period. I started getting tinnitus in the right ear. It sounded like wind chimes. It took me a few days to realize that the wind chimes sounded like they were playing Silent Night. I found that amusing since it was just before Christmas.

I also started experiencing dry eyes at night. That’s been continuous and I use Refresh. I don’t know if dry eyes are related although I have read that Acoustic Neuroma patients are known to have dry eyes post-surgery.

As a precaution I went to my regular physician on December 23, 2011. The visit was disappointing to say the least. He found nothing in the ear to explain anything. He had his assistant do a tympanogram but I think she got the leads reversed. She tried to do an audiogram but couldn’t get the machine to work. It was a bit of a fiasco but the doctor put me on medication on the odd chance that it might have been an infection. The medications were:

Methylprednisolone 4mg dospak 21’s
Amox-Clav 875mg tablets

No help.

I then reported my condition to my primary physician at the Phoenix Veterans Administration Medical Center at which time I was referred to an audiologist. The earliest appointment available was February 14, 2012.

By then I was experiencing balance issues.

The result of the visit to the audiologist was a finding of profound hearing loss in the right ear with zero word recognition. I was approved for hearing aids and the audiologist ordered the Phonak Cros and Audeo which I have and still use to this day.

She gave me a referral to the ENT. The earliest appointment was for March 5, 2012. At that time the ENT reviewed my history and ordered an MRI with contrast. The MRI was scheduled for April 4, 2012.

The results were given to me by the ENT on April 12, 2012. The MRI report is as follows:

Cylindrical intracanalicular enhancement. noted within the right
internal auditory canal measuring approximately 3 x 9 x 4 mm
(Ap x transverse x craniocaudal) likely compatible with an
intracanalicular schwannoma.

The ENT used the terms "acoustic neuroma" and "vestibular schwannoma", both of which I wrote down along with his brief explanation of the nature of the "benign" tumor. During that visit I reported balance issues, that I was unsteady on my feet and bumping into walls.

I agreed to monitor the AN (also known as Watch and Wait) and have a follow-up MRI in 6 months.

After that news I went home and started researching Acoustic Neuromas and learning all I could. I joined the Acoustic Neuroma Association and have been participating in forums where I have learned much about the experiences and options of others.

During the next 6 months my balance issues remained rather constant but more noticeable when I was walking on uneven ground or working in the yard or on projects in the workshop.

I returned for my second MRI on October 10, 2012. After finishing the MRI I obtained a CD of the images of both MRIs.

As soon as I got home I put the CD on the computer and, using the first Radiology Report, was able to locate the image from the first MRI that showed the Acoustic Neuroma and the corresponding image from the second MRI that showed the growth of the neuroma over the six month period. The MRI images had centimeter scales along the side and bottom of the image so I was able to determine that the AN had grown about 20%.

It was then that I decided it was time to kill it.

I obtained the written report of the second MRI from the ENT on October 18, 2012:

There is an enhancing extra-axial mass within the right IAc
extending from the porus acusticus to the fundus thrat measures
1.1 cm x 0,4 cm x 0.4 cm slightly increased in size compared to prior exam.
There is equivocal slight extension to the cochlea. There is no significant
extension to the right cerebellopontine angle.

During that visit with the ENT I was advised that future treatment would be handled by non-VA facilities but paid for by the VA.

At some point concurrent with the results of the second MRI it dawned on me that I hadn’t been hearing the chimes and tones in my right ear that I had reported earlier in the year. I hooked up headphones to my computer, played some music and, instead of the faint, tinny sounds of before, heard absolutely nothing.

While all that was going on I learned from this forum that the House Ear Clinic in California would provide a free consultation upon review of AN history and MRI images.

On October 30, 2012 I sent my CDs and history to House. On November 8, 2012 I had my phone consultation with Dr Wilkinson at House. Options discussed were Gamma Knife and translab surgery. He spoke highly of translab surgery as a relatively quick remedy to the balance issues and explained that Gamma Knife would not relieve balance issue and could make it worse. Frankly, I took his consultation with a grain of salt because I had already learned from this forum and other research that neither points were entirely true and that House invariably recommends surgery because there is no radiation treatment available there.

It was about that time that I had pretty much decided on Gamma Knife subject, of course, to further consultations with experts.

I am fortunate to live in Phoenix, Arizona which is home to the Barrow Neurological Institute. BNI has an Acoustic Neuroma Center staffed by a team of Acoustic Neuroma specialists who offer both surgery and radiation and are impartial in their consultations.

The VA approved funding for the outside services and I had a consultation with Dr Porter (neurosurgeon) at BNI on November 9, 2012. He was in agreement on Gamma Knife based on the small AN, my age, and symptoms. In November I had additional consultations with Dr Brachman (radiologist) and Dr Weisskoph (neurotologist).

I was subsequently scheduled for Gamma Knife in late December 2012 but the three doctors had a scheduling conflict and the treatment was pushed forward to January 22, 2013. That, dear readers, brings us to the beginning of this thread where I describe my day of Gamma Knife and post Gamma Knife experience.





3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #65 on: March 26, 2015, 12:20:31 am »
Update:

Two years and two months since Gamma Knife and I had a follow up MRI with contrast on Monday 3/23/15.

I obtained the CD on Tuesday and compared the images of the AN with the images from3/13/14. There appeared to be no change in size.

Tonight I obtained the radiologist's report from the VA's website. Confirms that the AN is essentially the same size and shape as it was a year ago.

So, while I was hoping for shrinkage, I'll settle for stable.

Here are the spec:

4/4/12 9mm x 4mm x 3mm (Date Diagnosed).
10/10/12 11mm x 4mm x 5mm
1/22/13 12mm x 3mm (Date of Gamma Knife)
8/1/13 14mm x 5mm x 4mm (Expected Swelling)
3/13/14 12mm x 6mm x 4mm
3/23/15 12mm x 5.5mm x 4mm

Probably looking at another year, maybe more, until my next MRI.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

NYLady

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #66 on: March 26, 2015, 07:27:03 am »
Hi Jack...

Good for you!  In keeping with the similarities in our ANs, I am hoping for a good report as well.  I was wondering if you have any necrosis or darkening of your AN on your films.  Another question, if I may, I am having another hearing evaluation next week in the hope my declining hearing in my good ear, as well as loss of all word discrimination in the AN ear can be helped.  What was the status of your hearing when you were given the Bicros hearing aids and did they alleviate your difficulty at all?

Once again, great news about stability...after all that is the original intent of having GK right?

Best to you...
NYL

mcrue

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #67 on: January 10, 2016, 10:22:50 am »
Thank you for this thread. It has been very informative for those of us considering Gamma Knife. Looks like you had very good results.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #68 on: January 10, 2016, 08:15:05 pm »
I'm coming up on 3 years since Gamma Knife. My last MRI showed ALF was stable if not ever-so-slightly smaller. My next MRI will be September 2016 when I hope to be able to report some shrinkage.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

NYLady

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #69 on: January 12, 2016, 12:23:51 pm »
Great news Jack!

When shrinkage occurs, does that equate to symptoms lessening?  Still am struggling with balance issues.  Completed 40 sessions of vestibular therapy and slowly the symptoms returned. 

Wishing you, and all members all the best in 2016.

NYL

DizzyMamaIL

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #70 on: March 04, 2016, 05:30:40 pm »
Thank you for linking to this in your signature! I'm very encouraged after reading it.
February 2012 - first doctor visit for vertigo
January 2015 - sudden hearing loss
January 2016 - dx AN 1.1 cm x 2 cm
May 2016 - radiation; June 2016 to present - headaches, vertigo; October 2016 - one episode of facial paralysis

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #71 on: March 15, 2016, 05:08:50 pm »
Those of you who have been reading these chronicles may recall that my tinnitus on the AN side, while faint and easily ignored, has taken some amusing turns over the years.

Well, during the last couple of days it's taken yet another amusing turn.

Now it's sounding like a telephone ringing.

Quoting Ernestine: "One ringy dingy, two ringy dingy, etc to the nth ringy dingy."

And the tire is still deflating in the other ear.

I'll try to remember to post any future changes.

Meantime, 6 months to go until my next MRI.



3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #72 on: March 17, 2016, 08:40:38 am »
It's back to rapid intermittent beeping.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

DizzyMamaIL

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #73 on: March 18, 2016, 07:03:58 pm »
I suppose the beeps are better than the phone ringing, right? I have worked in a call center and the sounds of phones ringing endlessly is pretty awful. I guess beeps would be, too, though. You have a great excuse to not answer the phone, though :-)
February 2012 - first doctor visit for vertigo
January 2015 - sudden hearing loss
January 2016 - dx AN 1.1 cm x 2 cm
May 2016 - radiation; June 2016 to present - headaches, vertigo; October 2016 - one episode of facial paralysis

arizonajack

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Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Reply #74 on: March 18, 2016, 07:35:47 pm »
I guess I'm fortunate that my tinnitus is barely audible. I've been sitting at the computer for a while and didn't notice the beeps until I got here and read your note and started thinking about it.

When I'm occupied I hardly notice it at all.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

 


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